By Ronni Gordon
When my year of isolation ended after a stem cell transplant at Dana-Farber/Brigham and Women’s Cancer Center in 2003, I looked for a blood cancer support group near my home in western Massachusetts.
I found support groups for just about everyone except patients like me with acute myeloid leukemia (AML) and other blood cancers. There wasn’t anywhere to talk about the challenges we face, from post-transplant restrictions to adjusting to the outside world after a year at home.
Luckily, Longmeadow physician Jay Burton, DO, and Chicopee nurse practitioner Kara Sawyer, MSN, NP, noticed the same gap. So in 2015, these two former Dana-Farber patients and stem cell transplant recipients started a blood cancer support group in Agawam, Massachusetts.
“You need someone else who can commiserate with you,” Burton said, recalling that when he learned he would need chemotherapy, total body irradiation and a stem cell transplant, he wondered first, “Am I going to live?” and next, “What was I going to miss?”
The group, co-facilitated by Burton and Sawyer, covers topics like how it feels to get a bone marrow biopsy, how to manage your diet after a transplant, and how to build strength after hospital stays. A few months after starting the Agawam group, Sawyer and Burton added a group in Enfield, Connecticut, where he practices at Springfield Medical Associates and where she is a nurse practitioner.
Sawyer, who had T-cell lymphoma and leukemia, co-facilitated a support group at the Leukemia and Lymphoma Society’s Natick office after her transplant in 2011. She said she noticed how much it helped patients.
“The transplant component and the isolation that follows is unique,” she said. “It’s beneficial to connect with others to learn the strategies to manage that journey.”
She talked to Burton about starting a group after reading that he was interested in focusing his practice on cancer survivorship. Burton, who had AML, had also been thinking about starting a support group after his transplant in 2010.
“He has a true passion; he’s a model in the community,” said Ann H. Partridge, MD, MPH, director of Dana-Farber’s Adult Survivorship Program.
At a recent meeting in Agawam, AML survivor Patti DuPont said she was unhappy that her hair never fully grew back after her 2015 transplant. The topic of hair growing in differently is a frequent one, and DuPont said, “It’s helpful to hear from people who have similar experiences.”
Over chicken parmesan and sandwiches at a recent meeting in Enfield, other attendees said they were experiencing problems with weakness in their legs.
“The hard part is deciding which is age and which is the disease,” said Cheryl Clark, who was treated for T-prolymphocytic leukemia and had a stem cell transplant in 2012 at Dana-Farber.
Everyone else nodded.
A long phone conversation with another leukemia survivor when he was diagnosed showed Dr. Burton how important it was to talk to someone who has been there.
“I’m a doctor and I still needed this,” he said.
Dr. Burton continues to be passionate about promoting an expanded understanding of survivorship as something “more than going to the doctor.”
After the blood cancer support groups got established, Burton created the non-profit Survivor Journeys, adding groups for breast cancer and melanoma, as well as an “all cancer” group. A mentoring program is also in the works.
The Survivor Journeys blood cancer groups meet at the senior center in Agawam on the fourth Thursday of every month and in Enfield on the first Thursday. Patients, their families, and their caregivers are welcome. Here’s where you can find times and meeting places.